Introduction
Mortality from lung cancer exceeds that from bowel, breast and prostate cancers combined and is the cause of death for 33,500 people in the UK each year. Sadly, although mortality rates from lung cancer have improved over the last thirty years, the outlook for patients diagnosed with lung cancer is still poor. In the 1970’s one year survival was 15% with a five year survival of 1-2%. The most recent data published by cancer UK shows one year survival of 25% and five year survival of 7%. These figures are poor by international standards where other developed nations such as USA, France and Germany report five year survival rates of up to 10-13%.
The Royal College of Physicians (RCP) conducted a national audit of Lung Cancer in 1997-98. The audit demonstrated large variations in outcomes for patients with lung cancer with a four fold difference in survival between the best and the poorest performing centres. The reasons for this variation were unclear and led to the formation of an informal intercollegiate group under the aegis of the RCP. This group developed a core data set for future lung cancer audits which was published in 1999. This data set included all the essential data items to describe the demographics, stage, presentation and management of patients with lung cancer.
The core lung cancer data set has become the basis of the National Lung Cancer audit. This audit, using the LUCADA database (Lung Cancer Data), began to collect data in England in 2004 with its first full year of data collection in 2005. The audit aims to record outcomes in lung cancer and through risk adjustment, to start to explain the wide variation in outcome still seen in lung cancer.
The National Lung Cancer audit is a part of a wider program of national audit run by the Information Centre for health and social Care (the IC). The audit is run in partnership with the CEEU at the Royal College of Physicians and funded by HQIP.
Methodology
The National Lung Cancer Audit is a web-based audit with all organisations caring for patients with lung cancer encouraged to participate. The on-line data collection tool encourages use of the lung cancer multi-disciplinary team meeting (MDT) as the central point for capture of information both about the presentation and management plan, with outcomes such as the date of surgery and other treatments being entered later. A recent change has been the automatic capture of the date of death through a link to the Patient Demographic Service (PDS). Users can enter data directly into forms on the audit website, or can upload data as a file with a specific format (such as CSV or XML).
The data collection tool, LUCADA, has been further developed with the release of Version 2 in July 2007. This second version extends the capabilities of the initial version with improved capability to capture information about cancer nurse specialist involvement, patient preferences, staging investigations, and modern multi modality treatments which were not in common use when the first version of LUCADA was developed. There has also been improved ability to capture data about mesothelioma (cancer of the pleural membrane).
Throughout 2005, only English data was uploaded, but from 2006, Welsh data collected via CANISC (Cancer Network Information System Cymru) has been included in the annual report, and it is anticipated that the, Scottish cancer networks will participate in the next report.
Day to day running of the audit is through the National Clinical Audit Support Programme (NCASP), a part of the Information Centre for health and social care. The audit has secure funding until 2009.
Results
The first full year of data (2005) was summarised in an Annual Report which was published in December 2006. Data pertaining to 2006 was published in the second Annual Report in December 2007. Both documents can be downloaded from the NHS Information Centre website.
In the first full year of data collection 77%of organisations who provide care for patients with lung cancer participated in the audit, rising to 93% in 2007.Furthermore by June 2008 only two trust English Trusts had never participated in the audit. As of the end of July 2008 over, 69,500 cases of lung cancer have been entered on to the system since its initiation.
From the 2007 report, key results include:
a) 67% had their lung cancer histologically confirmed
b) 86% of patients were discussed in an MDT
c) 48% received some form of active anti-cancer treatment
d) 9% of patients underwent a potentially curative surgical procedure
About 66% of the estimated numbers of lung cancer cases are represented by the audit. Hence results should be interpreted in this context. Furthermore, data required to perform risk-adjustment is incomplete, with only about half of patients having co-morbidity, performance status and stage recorded individually and less than a third have all three recorded.
The Future
2007 saw the release of version 2 of the data collection tool. Recruitment has continued to grow with both the numbers of organisations entering data and the number of records increasing. There has been greater emphasis on data completeness in the run up to the third Annual Report. This report will build on the success of the first two and includes data allowing hospital trusts to make comparisons with the national average as well as with other trusts. A risk-adjusted analysis is planned on a named trust basis, adjusting outcomes for age, performance status, stage, co-morbidity – this was included in the second annual report in an anonymised fashion, so as to prevent inappropriate inferences being made at a time when data completeness was unsatisfactory. It is hoped that as data completeness improves, this risk adjustment will begin to explain some of the wide geographical variation in outcomes seen in lung cancer. Furthermore, work is on-going to try to translate the huge amount of information collected by the audit into improvements in services and outcomes for patients at a local level.
The importance of national cancer audit is recognised in the National Cancer Plan, cancer peer review and by NICE. The Healthcare Commission now looks at participation in national audit as a performance indicator in the health checks for NHS trusts. It is clearly vital that everyone continues to support these important audits so allowing us to understand outcomes in lung cancer and to bench mark individual performance against national standards. In understanding the issues and then addressing the differences between the best and poorer performing areas we will see improved outcomes for lung cancer.
We are happy to answer questions about the lung cancer audit or other aspects of the RCP’s lung cancer programme, and would also be pleased to learn of any related ongoing or planned work in cancer units, centres or regions. Please see contact details below:
Support and Information
Support and information for staff implementing the national Lung Cancer Data Audit (LUCADA) can be found on
Links
The following documents are available in electronic format
- British Thoracic Society
- National Cancer Guidance Group (COG) - publications ( Improving outcomes in lung cancer – Guidance on Commissioning Cancer services: the manual, the research evidence. Published June 1998. Similar guidance documents in the same series published on: Breast cancer (July 1996) Colorectal cancer (November 1997) Gynaecological cancers (July 1999) Upper Gastro-Intestinal Cancers (January 2001) The Nursing Contribution to Cancer Care) on the DoH website
- National Lung Cancer Forum for Nurses
- Cancerline UK
- Link to NLCA Audit Report
Publications & Reports
Contacts
General queries: lucada@ic.nhs.uk
Technical queries: helpdesk@cfh.nhs.uk